How do you continue with day to day work?
Posted , 3 users are following.
Hi,
I'm 26 and I got diagnosed with HS a year ago now, have been suffering for about 6 years but was embarresed by it and when i did finally go to the doctors was told it was everything from a allergic reaction to a shaving rash (not that I shave under my breasts). As time goes on I am getting boils more frequently, or even some that never go down and in more and more places.
I have lost 2 jobs in the last year because of time off work and when I ask for help at the DWP I am told that they have never heard of HS. The social doctor sent me back to work in march 2009 and since the beginning of June I have been signed off yet again causing me to lose my job, which I had to argue with occupational health provided by my employer to get. The doctor I saw was a former surgeon who had seen cases of HS and did not think I was fit enough to return to work.
I am now on ESA and will have to see yet another social doctor who I am sure will tell me I am fit enough for work.
I was just wondering if there was anyone out there who manages to hold down a full time job whilst living with this and hw they manage?
I want to work but sometimes all I can bear to put on is jogging bottoms which as I'm sure many of you will know makes you feel underdressed for work and does not look overly good to any employer.
I feel like people think if they ignore this and keep pushing us to work and put up with it we'll just shut up and go away.
Has anyone got any ideas?
This is starting to get to me now and its affecting all aspects of my life, even though I have very supportive friends and family I feel like people just think I'm slacking and I'm not really in that much pain.
Colette
0 likes, 3 replies
jellybean13
Posted
I have had a diagnosis of HS for about 4 years...it got worst following bilateral hip replacements as i also have avascular necrosis. I work full time and have done so since 2006 when I returned to work after 5 years off having a variety of treatments and operations for AVN. It was my choice to return to work.
I informed my employers when I started and at the medical I had they said it should not affect my day to day work which in most part it doesn't as on the days it is really bad I work at home dressed in what ever is comfortable. I have an excellent derm doc as well as an excellent gp - I get pain killers which work - anti biotics that do not but hey who do they work for. I wash with hibi scrub which really helps I have just had both underarms operated on as they where getting bad and really affecting my work and so 4 weeks later I am back at work good as new. Some days it is more of a struggle but I get by with tea, chocs and sympathy from my boss ...... the latter bit is the key. To remain in work you need the understanding and support of your employers.
You may not be able to do all types of work but I am sure with the help of the DWP disablility employment advisor which your are entitled to they will be able to help identify a suitable job - maybe one that when things are bad you could in fact work from home - Get as much info off the internet from experts about HS and take it with you when you go for appointments so that when they say they do not know what it is you can inform them. thats what i do!
My heart goes out to you as I know what your going through but you have a right to work in an environoment which is not going to discriminate against you just because you have an illness which neither you or any of us chose to have ..... I am sure if I had a choice over being ill I would not have choosen HS .... it is an awful condition which is relentless.
Good Luck and keep fighting as that is all any of us can do!
Fiona
colette_146
Posted
I just hope I can find an understanding employer. I must admit it is a bit of a struggle for me as I am having to rethink my whole career as well. You cant be a teacher if you may need a lot of time off work.
Thank you for taking the time to reply to my post, it makes a big difference and has given me some ideas which seem so simple but hadn't crossed my mind.
It seems to be hit and miss whether people get the support they need from the dermatoligists, doctors and DWP. I suppose from what you said that the best thing to do is keep fighting for this and eventually I will find a place to work where this is not an issue.
Thanks
Colette
jellybean13
Posted
I used to be a senior manager of a large charity and was based in a school for children with autism and severe challenging behaviour.... I too had to take a career change and a salary drop which would make you cry but..... in exchange I have taken back my life from the control of both HS and AVN...which in itself is so invigorating ..... nothing like being able to stick your tounge out at the world sometimes!!
As you're a teacher you will have many skills which you will find are transferable to other careers ..... if not why not try private tutoring which you can do for a few hours a day .... or become a consultant .... i do behavioural consultancy and training other professionals in my spare time when I feel like it and when christmas is coming up and i need a little extra. This I can do as I have an understanding partner who does everthing else while I do extra work.
Seriously though you are entitled to help and I know it is hard and sometimes you have to stick your head above the parapit to get it .... but I look at it this way if I can't help myself who else is going to and you can always have a good laugh afterwards when you think of the stir you have caused in doing so!!
if ever you feel a bit down you can always mail .... i might not always be able to help but sometimes it jus'helps sounding off , especially when you know someone else actually does know what your going through and I can always amuse you with the stupid things i have tried in trying to get rid of HS!!
( and I have just thought as a teacher you will be srutinising my spelling and grammar :P )
Fiona